What I’ve Learned About Activism for Eating Disorders in the World of Politics

What I’ve Learned About Activism for Eating Disorders in the World of Politics

By Melissa Irene

In high school, some friends and I tried to organize a recycling program for our school. We participated in the Day of Silence to commemorate victims of hate crimes in remembrance of Matthew Wayne Shepard. We were activists in training, young and angry at the state of the world, and at the fact that there wasn’t more outrage surrounding things like Shepard’s brutal 1998 murder just a few years after it happened. The mother of someone I dated in high school had taken up a lot of causes in the 1960s, and she told me something that stuck with me:

“Being an activist is often a thankless job.”

The energy and passion I’ve always had for wanting to make the world even a slightly better place collided with the darkest period of my life, the years I suffered from anorexia. The distance between the time when I was a miserable, depressed, underweight college freshman in constant physical discomfort and being an activist who regularly does lobby work on Capitol Hill and gives talks on eating disorders, policy, and gender feels like lifetimes. Over the past decade, I’ve participated in, witnessed, and learned a lot about activism and how it exists in various capacities.

My hope is that by sharing some of these experiences, others will get motivated to join the fight. The eating disorder activist community is growing, but is still very spread out. Practitioners rightly prioritize their clients, a patient population desperate for adequate resources and often unable to access the few which do exist due to habitual, predictable, almost systematic insurance denials. Sound familiar? The fact that eating disorder treatment is so often denied by insurance companies and that eating disorders have the highest mortality rate of any mental health disorder cannot be a coincidence.

This means that this is a battle which must be fought on two fronts. Practitioners must continue advocating for their clients to secure the care they need to manage their recovery. However, without also fighting for policy changes, these circumstances will continue to get worse, not better.

Faith in a Flawed System

Whenever anyone tells me they’ve lost faith in the system, I can’t blame them. Before I go any further, I would like to state that I do not claim allegiance to any one political party. My father once told me that the only logical position in a two party system is to be an Independent, and while many may disagree, through doing grassroots activism I have come to see the wisdom in his logic.

There are plenty of reasons to be dismayed with U.S. politics. After all, the 113th Congress, in session from 2013-2015, has been determined to be the most unproductive congressional session in United States history. Republicans have a majority in the House of Representatives, but infighting between ‘establishment’ officeholders and members of the Tea Party make it hard for them to agree on many things. Without term limits, career politicians (from both political parties) get comfortable in Congress and avoid supporting otherwise popular and important ideas if it might compromise their ability to be reelected.

Here’s a good, recent example. House Majority Eric Cantor (R, VA) is the first House Majority Leader to ever be unseated during a primary. There are plenty of reasons and theories as to why this happened, the most obvious on the surface being his opponent, David Brat, ran on a single platform against immigration reform. While that message may have invigorated a vocal minority, it’s also important to note that only 13% of registered voters bothered to vote in the primary. However, the Washington Post reported that Virginia’s 7th District usually has even lower voter turnout; 13% is a new record for the past decade or so (Bump). Meanwhile, the Huffington Post points out (McAuliff) that polling in the same district finds immigration reform to be very popular with a strong majority of residents, while Cantor’s approval rating was at a mere 30%. Additionally, Senator Lindsay Graham (R, SC) easily won his primary despite being a supporter of the Senate’s already-passed immigration bill. Despite these complicated circumstances, news outlets were quick to declare immigration reform not only dead for this session, but to insist that other Republicans should take note of what happened to avoid a similar fate.

This type of black-and-white thinking plagues electoral politics, and that’s before considering the way that big-money, corporate donors influence politicians, or the fact that a majority of Congress happen to be millionaires (Carnes) as reported by the New York Times. I’m not criticizing anyone for being wealthy, but I think it’s worth asking how well representatives who are very well off can relate to families who have to decide between getting their teenager the residential eating disorder treatment he or she needs and paying their mortgage. This all may sound as though I’m arguing against the political process, but despite all of these things, I keep going back to Capitol Hill to talk about eating disorders. Here’s why.

Parity and Politics

In 2007, I somehow talked myself into driving to Washington, D.C. to meet up with a friend I had only ever spoken to online and speak with a bunch of total strangers about my experiences with anorexia. I was still in recovery at the time, and it was actually the first time I’d ever done anything close to public speaking about recovery. It was nerve-wracking and it was scary, but it was also a very positive experience. Other than times when I had been in recovery groups, I had never been around so many people who understood eating disorders, and that sense of understanding created a sense of community in the brief time I was there.

It was at the end of the day, though, during the Congressional Briefing coordinated by the Eating Disorders Coalition (EDC) that I was truly impressed. At the time, we were advocating for the Mental Health Parity and Addiction Equity Act (MHPAEA) which was being championed in the House of Representatives by then-Congressman Patrick Kennedy (son of the late Ted Kennedy). After a series of speakers who provided some expert testimony to the nightmare of securing adequate treatment, Patrick Kennedy came in and spoke with fervor about advocating for mental health coverage, substance abuse, and eating disorders. He must have spoken for twenty minutes without any prepared remarks or notecards, his passion for the issue apparent.

My apathy about the political process was challenged that day. I might even say that Patrick Kennedy single-handedly restored my faith in politics, seeing such a well-known Congressman have so much to say and be unafraid of sharing his own struggles with alcoholism. He wasn’t pandering to anyone; he was a true advocate. That advocacy paid off, too: the MHPAEA passed in 2008 and became law.

Here’s a little background on parity legislation, and why the MHPAEA was such a big deal. Before 1996, insurance companies could freely limit the number of annual and lifetime dollars for mental health benefits separately from physical health benefits. This means mental health benefits were often much lower, despite the fact many mental health needs can be just as debilitating as any physical illness and injury, not to mention that physical health and mental health often intersect.

Senators Paul Wellstone (D-MN) and Pete Domenici (R-NM) formed a bipartisan team for the 1996 parity law which closed this loophole, declaring that annual and lifetime dollars must be equal to policies which cover mental health benefits. Post-1996, however, insurance companies began limiting treatments, visitations, and sessions in almost exactly the same way they had previously limited monetary benefits; the law was largely symbolic, and changed little.

The 2008 law sought to close the new loophole created by the 1996 legislation. It would have, too, except for one small problem: the 2008 MHPAEA didn’t “define” mental health. It’s a very strange thing to say – after all, since when does mental health need to be defined? Unfortunately in the world of law, everything must be defined, and mental health is an ever-evolving field which results in it being treated far more subjectively than any of us would like. After all, homosexuality was listed in the DSM until 1973, and Binge-Eating Disorder wasn’t included until 2013! Meanwhile, the National Institute of Mental Health (NIMH) has largely rejected the DSM-V when it comes to funding research (which would require an entire article on its own to properly discuss).

The original Bill that Kennedy was advocating for in the House would have included anything listed in the then-standard DSM-IV, but the final version didn’t include any such specification. So what does it mean for people with eating disorders for a landmark bill such as the 2008 MHPAEA? For starters, it means that insurance companies are free to define mental health within their own mental health policies. After the law went into effect, the EDC received many copies of letters from insurance companies sent out to policy holders stating that their mental health benefits flat-out offered no treatment for eating disorders.

Patients and Patience

This brings me to something else I’ve learned about politics as an eating disorder advocate: things take time. After parity passed, the EDC helped introduce the first eating-disorder-specific legislation in the history of Congress, initially championed by Patrick Kennedy (and currently being championed by Representative Ted Deutch of Florida). In a post-parity world, though, most offices assumed that the 2008 MHPAEA settled things, and that further legislation was either premature or unnecessary. This is compounded by the fact that many Republican offices are flat-out unwilling to consider any disease-specific legislation – they are interested in broad reforms only. This is a difficult position to reconcile with such an underserved population so desperately in need of sufficient and accessible treatment.

Unfortunately, though, it takes time. Looking at the timeline between the 1996 and 2008 parity laws, it took over a decade to try and fix the loopholes. Realistically, proper support for further legislation might not exist until at least 2018 if a twelve year cycle is to repeat. Meanwhile, eating disorders are on the rise, and anti-obesity efforts are already contributing to children engaging in unhealthy and disordered eating behaviors. Things are getting worse, not better.

Perhaps more than anything, the world of politics has taught me that activism requires patience. It’s painful, it’s frustrating, and sometimes even demoralizing to know that every week, month, and year that pass without reforms to treat eating disorders like the serious and deadly problems that they are, more lives will be ruined or lost, and more families will go bankrupt or torn apart trying to get their loved ones the care they need and deserve.

The warning I received that activism was a thankless job feels more relevant as time passes, but I’ve also come to see it in a different way. If you’re looking for instant gratification, activism (in general and especially for eating disorders) isn’t going to provide it. But that sense of hope and community I experienced back in 2007 never went away, either. I’ve developed real connections with people from all walks of life, many of whom I would have never had a reason to speak to if it weren’t for our shared passions. By doing this work, I’ve much to be thankful for.

Between the twenty-four hour news cycle and internet activism, it seems to have become a trend to surround oneself with like-minded individuals and put up walls against those who may disagree with us. I am thankful that advocating for eating disorders has taught me another kind of patience – that which allows a dialogue with people from all walks of life. When you follow politics, it’s hard not to have opinions on political issues. I certainly do. I posit, though, that advocating for eating disorders is inherently non-partisan.

Doing work on Capitol Hill is about finding practical ways to improve the lives of people with eating disorders, but that spirit isn’t limited to working with Congress. It must carry over to all that we do, lest we compromise our capacity to advance this cause. This isn’t about which organization’s name or logo is the most prominent or who gets “credit” for legislative victories, it’s about being allies and building relationships. I don’t care what your party affiliation is, who you voted for in 2012, or how much you love or hate Obamacare. Want to work on truly improving the lives of people with eating disorders?

Let’s talk.

About the author –

Melissa Irene is a writer and activist based in Richmond, VA.

References:

Bump, Phillip. “Eric Cantor didn’t lose because of low turnout. He lost because turnout was so high.” 12 June 2014. Washington Post. 15 June 2014.

Carnes, Nicholas. “Which millionaire are you voting for?” New York Times 13 October 2012.